The dreaded DWP phonecall - but all is calm, all is bright (for now!)

It seems a crazy and contradictory situation to be thankful for being told you are "unfit for work". Does that make someone a scrounger or a conscientious realist? I hope you can understand my gratitude that for now, while I am too ill to leave bed or house some days, this is the best outcome for me for the time being.

An older gentleman from the DWP rang me this morning at 9.48am. I thought he was about to tell me I was being called in for a Work Capability Assessment (the much-criticised and humiliating DWP medical) carried out by ATOS.

On the contrary, he was very gentle and full of reassurance. Nothing to worry about, it was a "courtesy call" to tell me the outcome of my filling in the ESA50 last month. Because this is just a couple of days before the post shuts down over Christmas, he wanted me to know the outcome, just in case the official letter doesn't reach me in the next few days. He hopes it will come tomorrow, but can't be sure with the Christmas rush.

He explained that my migration from Invalidity Benefit (IB) to the new equivalent Employment and Support Allowance (ESA) has been successful. He also stated that I should not be contacted again for WCA for 18 months. The change over should happen about January 17th, and the rate will remain the same. I asked whether this meant Support Group (SG) or Work Related Activity Group (WRAG) and he said the latter, which is right, and what I had hoped.

This usually entails 6 Work Focused Interviews (WFI) with a personal adviser. These cover matters like dealing with your illness, acquiring skills, voluntary work etc that may help prepare for a future return to work. Basically, tackling any barriers that need to be overcome in order to return to employment. The sort of things always uppermost in my plans and the focus of my efforts even on my very worst days. (Also a more structured equivalent of the work related interviews I had in 2008 with a personal adviser at the local JCP in the weeks after my original claim once SSP had run out).

I will need to be careful to try and be well enough to attend these WFIs when called, as this is part of the contract, even though at the moment (until and if the hotly contested 1-year time limit on contributions-based ESA comes in through the Welfare Reform Bill in April 2012) there is no sanction if you cannot find a job by the end of the 6 WFIs. That is tomorrow's worry, even if it remains today's fight on behalf of all those who have not been fortunate enough to have been placed in the correct group. Please don't think this post is smug or triumphalist. I feel for everyone who has fallen foul of the deeply flawed system through no fault of their own.

Figures I have seen claim that, of those who apply for ESA:
6% - Support Group
16% - Work Related Activity Group
 36% -claim withdrawn
3% -  claims in progress
39% - "fit for work"

Sorry if these aren't the latest statistics. I've seen various figures quoted and am now so brain-fogged, I can't sift them for the most recent! This info is taken from here

Point I'm trying to make is I feel very fortunate I have been put in the WRAG, at least, just from medical information without the full ATOS medical. Perhaps they looked back at the one I had in 2008 and saw from my records that my illnesses (Type 1 diabetes, no hypo symptoms & M.E.) have not improved, and have in some ways deteriorated.

I would be interested to see the ESA85 medical report from which such a decision was taken, but won't do this with any intention to appeal. The support group is limited to very specific cases, and if the time comes when I fit those criteria, it will no doubt be apparent to those putting me through the various work-related hoops!

More determined than ever to keep trying to raise awareness and fight for the many people in dire need who have been cut adrift. When I was fit to work in years past, I always tried to be compassionate to those who were hardest hit in society. I won't be stopping now. Though at the moment, I must leave the blazing ferocity of the laptop screen and rest in a darkened room! Certain nightmares have been put on hold, for now. If I was any more thankful and grateful, my heart might well explode!

Mrs Overdone overdoing it again! Know when enough's enough?

Sorry if this post sounds a bit disjointed! (Or maybe that's a blessing!)

Today I'm rather sick to sit for long. My stomach is nauseous; ears ringing; can't tolerate much light or sound; wrists, arms, chest sore; stabbing pains in my hips; palpitations; burning and shivering; tender glands; voice weak and absent at times. Can't concentrate to remember what I'm supposed to be doing from one minute to the next.

Slept until almost lunch time today. Slept a lot of yesterday too. Mum called in with lunch to make sure I got something to eat and to check I was OK blood sugar wise.

No wonder really. This is real payback time after the weekend.

I managed to finish filling in my ESA50 and sent it off last Friday. I had intended pacing myself to get it fully completed without need for haste, ready for the stated deadline 8th December. That's what the letter accompanying the form said. Then last Thursday another bullying letter from ATOS. Yes, I know it's routine, but it nearly imploded me from the shock. Thursday's "form" reminder to say they hadn't yet received the form stated I risked losing benefits if I didn't return the form by 1st December!! 1st December! Was this a mistake? A trick? My mind was racing. Thank goodness I'd made a good start already, but it still meant some rushing to finish.

I used the blank section of the ESA50 intended for you to explain if you are returning the form late. Only I said it wasn't late. I fully explained the effect on someone with a chronic illness where rest and pacing is essential, of having this sudden change of deadline in mid claim. I said if they didn't move the goalposts without explanation a second time, the form should be with them by the 1st. That may disqualify me immediately for being "non compliant" to their nonsense. At least I'll be going down fighting! I did add a "thank you," more in keeping with my normal courtesy at the end of this section. I know I'm not alone in finding their duplicity utterly infuriating.

That left less than the planned period of rest leading up to Sunday's long-established commitment to take the Advent service at my local church. I had a lift there and kneelers stacked on the pulpit seat to help support me to sit at times and still be seen from the back. I had members of the congregation doing all the readings and lighting the first Advent candle in the Advent Crown. I had my stick with me to balance for the prayer of dedication over the collection plates (even then, the stewards said they were worried I looked wobbly enough to drop them!) and for coming forward to the altar rail to share the words of blessing at the end of the service. I'd had all my words written down in case of brain fog meltdown and losing my train of thought. Even with all these props in place, plus a powerful radio mic, as soon as the service was over, I hadn't much voice left for greeting people on the door afterwards. I had to slump against the wall and then sit again to make it through.

As I've said before, although it seems frustrating to be able to do so little and so seldom, I'm just so thankful to do this at least, no matter what the cost in relapsing afterwards. I always seem to have just enough resources (not from my own strength, for sure!) to do what I believe I'm called to fulfil. People here know me and most understand a little more about M.E. now, so I'm very thankful for their support, love and help.

New friends, the daughter and granddaughter of a dear couple of friends in this congregation, were visiting from Scotland and came to the service. It was wonderful to meet them, if only briefly, after the service. My friends' lovely granddaughter is a young teenager who has also had M.E. since 2008. Now she is able to attend school part-time, even though I know it must be such a struggle for her at times. She must make her family so proud! It felt good for us to meet, with her lovely mum, after long comparing notes of our situations through M.E. via her grandparents. Like me, I think she finds writing a great outlet and a joy that can be enjoyed on days when more energetic pursuits are ruled out.

I had also been invited later to other friends' Golden wedding celebrations. Ideally it would have been on a day when I wasn't doing another huge challenge, but life doesn't come with pacing built in, does it? Anniversaries come when they come, don't they? All my friends at this beautiful event completely understood my health problems, and helped to make the day as easy as possible for me, including lifts, rests etc. After lunch we had a time of photos, laughter and reminiscences back at the home of my friends' daughter. I enjoyed every minute and treasure every second.

No wonder, though, that post-exertional malaise and all the attendant symptoms are now catching up on me with a vengeance. I feel like I've been running up Mount Everest while being run over by a steam roller! More than worth it, though. I'm just very thankful I've no other major commitments this week as I try to recover! Winter may be playing its part with wind and wetness, cold and chilliness making it more of a struggle to keep well. I'm constantly fighting viral symptoms at the moment. But there are happy memories to enjoy and so much to be grateful for!

On a world scale, there's more good news from Norway. After the encouraging trials of Rituximab in the treatment of CFS (however they are actually defining it), and their Government's apology to M.E. patients for the lack of awareness and treatment in the past, comes real positive action. The Norwegian Health Minister Anne-Grete Strom-Erichsen pledges 2 million krone to the two doctors involved for further research, as well as promising a national M.E. centre in Oslo!

If only sorry wasn't such a dirty word to the UK powers-that-be. Please catch up, UK! We're still here, struggling. Advent is a time of hopeful preparation. That makes my spirit sing with joy and celebrate everything around me as miracle and gift.  But medically, bodily, even pacing shouldn't justify the medical profession and politicians  keeping us waiting  for ever, if it's in their power and possibility to be faithful to those they care for!

Believing six impossible things before breakfast

"Alice laughed: "There's no use trying," she said; "one can't believe impossible things."
"I daresay you haven't had much practice," said the Queen. "When I was younger, I always did it for half an hour a day. Why, sometimes I've believed as many as six impossible things before breakfast."
-Lewis Carroll in "Alice in Wonderland"

Here is a letter that passed between Lord Freud, Minister for Welfare Reform and the Countess of Mar, the prominent advocate for M.E. awareness. Freud reply to Mar.pdf

It clearly states: "Therefore, for the avoidance of doubt, I can be clear that the Department does not classify CFS/ME as a mental health disorder."

Yet I equally clearly heard another male peer express as a fact that it was not known whether the disease was wholly mental or would one day be cured physically. This was during Monday's House of Lords discussions of proposed amendments to the Welfare Reform Bill (stopped myself typing "catastrophic" there - didn't I do well?). Apart from his giving no convincing or indeed any satisfactory responses to his noble friends' many probing questions, I did not hear Lord Freud or anyone else correct him.

So who will speak the truth in our own assessments with ATOS and the DWP? The silence is deafening.

In other news, I see M.E. biomedical researcher Judy Mikovits is likely to be released from jail tonight after being arrested last Friday on felony charges relating to her dismissal in September from the Whittemore Peterson Institute in Nevada.
Inmate Mikovits meets judge
When will the truth be heard in this distressing case?

I think as M.E. patients, we are getting pretty skilled at "believing six impossible things before breakfast". It takes practice, but we get so much of that these days. Hard to swallow like our swollen throats and glands. Hard to get our head rounds in the midst of brain fog. But practice makes perfect.

The tragedy behind the casual cruelty of the WRB: R.I.P. Mark and Helen Mullins

The magnificent Sue Marsh of  Diary of a Benefit Scrounger was on TV tonight. Sue explained in her eloquent, passionate words exactly why it is vital that people hear the real human needs masked by the current tide of disability hate kindled by the BBC, the tabloids and broadsheets and by politicians across the board. Why the Welfare Reform Bill being bulldozed through by the Coalition Government is no more "fit for purpose" than so many genuinely sick and disabled citizens are, in spite of the flawed processes of ATOS and the DWP, realistically "fit for work".

Nobody can see what it might have cost Sue in health even to make it to the studio. Or the effect her efforts might have had on her own health afterwards.

Sue Marsh: Is Everyone Entitled to Welfare? on 4thought TV 

I left a comment about Sue's inspirational segment on "Is Everyone Entitled to Welfare" tonight (8.55pm Channel 4 8th November 2011)  on the 4Thought TV site:

"Sue summed up so well the real, urgent plight of those who are genuinely disabled and totally dependent on benefits for day to day survival. 1 minute 44 seconds seems short airtime to counterbalance the media's increasing bias against welfare recipients, but Sue made every second count, so thank you so much. The suicides in Bedworth announced today are a tragic illustration of the chilling truth behind Sue's words."

The suicides I refer to are unlikely to make the national news.* It doesn't suit the propaganda machine to reveal that a good, conscientious, loving couple like Helen and Mark Mullins from Bedworth near Coventry, felt they would rather die side by side then continue to starve and freeze. Or to be classed and branded on national TV as scroungers and pitiable parasites.

The propagandists would like you to believe most benefit claimants drive Bentleys, sail yachts, have houses abroad, swing the lead, or act like wheelchair using Andy to a duped carer like Lou in a warped sketch from some private "Little Britain".

Mark and Helen didn't even have a fridge or freezer. They made the handouts from a soup kitchen, to which they weekly trudged six miles on foot, last them all week, warmed up on a one ring stove. 

Bedworth 'suicide pact' couple found lying side-by-side 


Helen was told she could not work by Job Centre Plus. The DWP equally maintained she could not qualify for incapacity or disability benefits. Quick to cut and pronounce. Blind to suffering. Slow to plug the leaky gaps in their own systems that let the icy winds of poverty blow through the lives of innocent, vulnerable citizens. Numbers and tick lists instead of names and real people like Helen and Mark.

Please take a couple of minutes to listen to Sue. Then hear Mark, with Helen at his side interviewed last year when they had been stuck in the system without help for more than a year already. They do not strike me as people who were eager to beg or wheedle. So they chose the only other way they could see out of a Catch 22 situation. Tragically they are not alone. Nor will they be in future.


The uncertainties of inhabiting a human body means that anybody, even the most smug and self assured, may tomorrow find themselves in an identical dilemma.


Please reflect before you glibly dismiss millions of your fellow human beings as less than human and so beneath your contempt and concern. This tragedy is a memento mori for all who think themselves immune from sickness or crippling downturns.

Today self reliant and smug. Tomorrow a statistic in a bureaucrat's closed file.

* Update: 9th November - I apologise that I was wrong that this would get no national coverage. The story was actually picked up today by the Daily Mail Army Veteran and his wife die in tragic 'suicide pact' after becoming 'too poor to live through the winter'
and tonight on the Channel 4 news.  

Wait a minute, Mr Postman!

I got back yesterday from my 50th birthday weekend spent at my Mum's in a nearby village.


The two bus journeys back, even though simple and with almost no walking in between, have wiped me out. Much of the weekend itself was spent asleep or horizontal. My palpitations (after the recent massive diabetic hypo), nausea, pain and dizziness have been very much part of the celebratory weekend. 


Thankfully, I managed to rest up enough to do what I'd promised at Mum's local church on Sunday. It's a small congregation who have known me since I was a child. They're too kind to spot mistakes I know I made, or judge me for having to slump in the chair at times instead of standing in the pulpit non-stop. 

I had to lie down and sleep at a friend's before the lunch she'd invited us to share afterwards. Words didn't come so easily when I didn't have them painstakingly prepared and written down in front of me. Small talk can be such a big deal with M.E., can't it? I felt like I'd got both eyes in the same socket after a few hours. I still count my blessings at what I can manage, compared to me at my very worst with M.E. though. 

Coming back through my own front door yesterday, I found myself paddling through a mountain of mail. Much was the usual junk. Some was belated birthday cards. One was the dreaded brown window envelope so many of us have been waiting for so long. D.W.P.'s return address in Belfast was printed on the reverse, and these were the first words my eyes picked out in the whole untidy pile. I opened it before I even took my coat off. Better to know than yet another day wondering.

It was good old IBM01, all four "helpful" pages, telling me about the changeover from Incapacity Benefit/Severe Disablement Allowance/Income Support to Employment & Support Allowance. Explaining that as "customers" (don't you love that meaningless, patronising term in the circumstances?) "will be considered and assessed for Employment and Support Allowance between 2010 and 2014", "We are writing to you because you are affected now".

They check they have the right contact phone number and promise to phone some time in the two weeks following date of posting (8th October). It's almost exactly three years since my last DWP medical assessment which I passed. Although I face the same health problems most days as I did back then, plus some extras, I fully expect to be disallowed this time. We all know it's no longer about disability. It's a cost-cutting exercise in which nothing and nobody is treated with medical insight or even the wisdom of common sense.


So now the sickening wait for the first brown envelope to fall is over. Now I'm waiting for my mobile to ring so they can confirm my identity, and begin to find reasons they can brand me a workshy scrounger. I don't recall being that cynical the last time I was assessed. I had no reason to. 

After that, I'll be sent the chunky health questionnaire, "Limited Capability for Work", struggle my way through that, then wait to be called to the WCA (Work Capability Assessment) and then the sword of Damocles will fall. I don't know whether I would have the strength to grind myself down and waste my last few "spoons" in an appeal. Another visit from the church next week to see if, one way or another, there is something I can do with the little sporadic health I have. That will be a lifeline, not least if the little I have to live on is snatched away.


I recently read a shocking story that these forms are first opened by postal staff! I can't even decide whether to mention this to the person who rings me. Or will that cross me off from credibility right away? Que sera sera. I just pray I have the strength to stay positive and gracious now this terrifying ordeal is beginning at last. It can never be quite as trying, draining and humiliating as living with chronic illnesses is, now, can it? Or can it?

I have to stay strong, so in future I can still be some use or encouragement to others faced with this disease. We can do this, but not alone!


In other news: tomorrow I see my GP for the first time in a while, about the recent hypo leaving me further weakened by palpitations, just to check my heart is behaving itself.


In the best news of all: my 50th birthday fundraiser for Invest in M.E. has already made over £800 for the charity, smashing my £500 target with an amazing 161% of total! Further donations are still being promised, and my page is still open for donations till 31st October at the end of the month! 


Joyce's 50th Birthday Gift For Invest in M.E. 

A HUGE thank you to everybody who has given whatever they can to make my birthday wish come true! You are potentially helping all those with M.E. to have the chance of a brighter future! Bless you! Please know what a difference we can make together. We need each other more than ever in these difficult times XXX

Voice of the Voiceless "Scum"

Hear nowt...

See nowt...

Say nowt...erm, not likely!

Guardian article about the fight for the genuinely disabled



This article (link above) highlights how one woman is making a difference. Like disabled and disabilty rights campaigning bloggers everywhere, she is helping to enable the voice of the genuinely disabled to get across, in the face of the latest panic-driven welfare reforms.

We all know reform is needed. The fear is that the "one size fits all" approach, where the form-fillers of ATOS (to whom inadequately devised new "capability assessments" have been farmed out by the Department of Work and Pensions), will deem everyone fit for work just in order to tick boxes and meet targets.

Like most of us, I've been through rigorous DWP independent disability assessments before, when the outcome was always that in no way was my health adequate to return to work, even part-time. A pen-pusher saying "you're well" has never yet been a cure for systemic disabling illnesses like M.E.!

I really admire how this disability campaigner,  Kaliya Franklin boldly calls her own website:



Benefit Scrounging Scum


This is the label the media has blithely affixed to her, to me, to you and all those forced out of their jobs and onto welfare or early pensions by genuine illness, lumping us in the same bracket as malingerers and cheats to whom we bear no resemblance at all.

For many of us who are ill, the current welfare reforms that target all alike, fill us with dread, despair and unwarranted shame. Jobs are hard to come by even for the young and fit. Those of us who might manage to muddle through for a day or two, would then be so crashed and unwell that we would be worse off than ever before.

I know. I've been there. I forced myself back to work so many times until I could no longer walk, think or speak with M.E. 

Claiming welfare is no glamorous "lifestyle choice". It's a last resort. It's a lifeline that we hate to have to ask for, and one we never in our wildest nightmares imagined we would have to rely on, for a day, let alone for an extended period.
 

I, like thousands of others, earned a decent wage in a demanding, satisfying professional career and long studied-for calling, after a lifetime's apprenticeship of experiences, work paid and unpaid, and grafting.

I paid my taxes (I never claimed for half I could have in my job!) which I still pay, of course, living greenly, cycling and walking, working on my days off whenever the phone or doorbell rang, going the extra mile without a second thought (as everyone does in caring professions and  so many others), always called "hard-working", relied on by many with a full diary of work and social commitments and connections.


Now, through no choice of my own, here I am. Through some unseen virus, picked up through hard and risky work in foreign parts, (which people wrongly thought heroic, or crazy at the time, people who filled up my "spare" time for years afterwards wanting to hear all about my work, at their fundraisers and meetings!) I'm suddenly counted by those who don't even know me or my blemishless history of conscientious citizenship, as scum. Everyone and their dog can now say whatever they like about me and wish me to hell in a leaky handcart as a contemptible "benefit bludger."


We may be too sick to march or protest as we might have when well, as we gladly did back then on behalf of those more vulnerable people for whom we once gladly spent our time and efforts, and will again if able. (Speed that day!).


But there are ways now, by internet, for instance, by which vulnerable voices can still be heard. Some days I'm too sick to read a blog, let alone write one, but when I can, I try to do my part.


I lend my support, such as it is, to disability rights campaigners like Kaliya Franklin in this article, and her fellow blogging colleagues, like those who blog as


The Broken of Britain


and I appreciate The Guardian (for once!) for giving the unpopular hoarse voice of we voiceless "scum" a balanced airing for once, without all the devastating vitriol and hype.